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British Lung Foundation
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Don't be duped!

On the 29th November my GP intends to expel me from his surgery, because I discovered by chance this time last year, I had Emphysema, and Pulmonary Fibrosis, two of over 16 different lung diseases! He and the COPD nurse were going to withhold my Consultants diagnosis from me, and just say I had COPD! Do not be fooled, if your GP or COPD nurse says you have COPD, you don't. You have lung disease yes, but what type of lung disease? COPD is a collective term for many lung diseases, and you have a right to know which you have!

A few weeks ago my GP wrote to me and said its time for my annual COPD checkup, and to make an appointment with the COPD nurse. I wrote back and said since I discovered by chance I had two life threatening, and incurable lung diseases both he and the COPD nurse were going to conceal from me, I no longer wish to be treated by both of them! He said my Consultant should have told me, I wrote back and said he referred me to a specialist Consultant, and after tests, she replied back to him with my diagnosis, which is the correct professional procedure! In any case my Consultant said she would only be able to see me once every 9 months to a year, during which I would have been left ignorant of my lung disease!

However, my GP had my Consultants diagnosis sent to him three days after she saw me, but he did not ask me to come in and have it explained to me, instead he referred me to his COPD nurse, 6 weeks layer, who wasn't going to inform me of my Consultants diagnosis either! I have a right to refuse treatment which is what I have done, on the grounds that if someone deceives you once, would you trust them a second time?

My GP has now said he is de-registering me from his surgery, where he is a senior partner, and told me to find another GP surgery. I have written back and said I have no intention of registering with another practice, and will be protesting in his waiting room if I no longer receive my medication because he has removed me from the practice. When said I refuse to be treated by him I meant him, there are 7 other doctors in the practice, and I wanted to be treated by one of them.

So watch this space, because I have drafted a leaflet I will be distributing in his waiting room, titled WATCH ME DIE! The first line is "My GP failed to inform me of my Consultants diagnosis as a matter of policy, according to letters I have from his Practice Manager, who said in answer to my complaint, with 10,000 patients it would be too difficult to copy Consultants diagnosis to them! So if your GP says you have COPD ask him which one of the 16 or more lung diseases you may have?

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That's terrible, you have a right to know. Stand by your beliefs hope. Things work out for you.

😊 Bernadette xx

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Hi

COPD is a umbrella term for emphysema and chronic bronchitis and maybe chronic asthma. Not for all lung conditions. Obstructive is a broader term for many lung conditions including emphysema, Restrictive is another broader term for many lung conditions including Pulmonary Fibrosis.

You was wrong in accessing the surgery computer how ever well intended, you could just as easily accessed other patients information.

You letter of complaint should have gone to the practice manager. Where a amicable solution may have been found.

Has you have chosen to refuse treatment then you have to accept the consequences of your actions and move on, locate a new practice. Any further disruptive action on your part will only serve to further alienate you from finding a suitable practice and allowing you to receive the treatment that you require.

You can always take your grievance further at a later date.

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I have spent the best part of the last year taking up my complaint with any amount of official bodies, but none of them have the power to stop a GP withholding a Consultants diagnosis from a patient! I believe this is national, and is a cop out by the medical profession. I tried to raise it at the surgery at a Patient Participation Group meeting, but the Practice Manager blocked it!

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Hi

Correspondence between your consultant and GP, is privileged under the Data Protection Act. And is just to update your medical records.

I don’t quite understand why your consultant didn’t discuss your diagnosis and possibly treatment at your appointment. Mine have and even changed or recommended new treatment. A trip back to GP to confirm, and alter the repeat and answer any further questions I may have.

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Oh Stone, this is just too tedious. We can tell them the facts until we are blue in the face but there are some who just won’t be advised. A waste of our energy.

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I don't know the rights or wrongs of this and neither do I want to. I will say however it is not doing you any good in your state of health. Sometimes in life we just have to let things go and move on for our own sake. My advice is to let it go and put your energies into achieving the best life you can for yourself and your loved ones. x

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I only wanted to refuse treatment from my GP and the COPD Nurse, because they had deceived me, and be transferred to one of the other GP's. I have a right to refuse treatment, so why did the GP react like a conceited, arrogant, petulant numpty? I had tried on 3 occasions to get the practice to stop this policy, because I am not a child, and wanted to be treated as a grown up human being. GP's are not God! My God is stronger than them!

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Because many doctors are arrogant and patronising so it wasn't a personal attack on you but you are treating it as such. I learnt many years ago that you can only control how you react and not other people so trying to 'force' anyone to your point of view (No matter the rights or wrongs) is useless.

It sounds like this is consuming you to the point of affecting your physical health to say nothing of your mental health. If you are hoping to get an apology from your doctor/nurse/consultant you are on a hiding to nothing coz it will never happen. This is reality I'm afraid. You can only ever deal with the way things are and not the way you want them to be.

I will say again let it go. x

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Totally agree with you hypercat54. GPs do have the right to remove a patient from their list: nhs.uk/common-health-questi...

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Yes you have a right to be told of your diagnosis. Good practice would be to copy you in to your consultant's letter to your GP. I agree with everything Stone has written above so wont repeat what he's said but what I do think is that in refusing treatment because of this oversight is kind of cutting off your nose to spite your face.

You seem to be approaching this as a conspiracy. As I interprete what you have written, it seems far more like a cock-up than a conspiracy. If you make too much of a fuss no GP will want to register you as their patient. GPs are under enormous stress at the moment - they are not going to willingly give themselves more hassle. Other practices are not likely to want you either. Sorry if this seems unsupportive but frankly it's reality, so as others have said, let it go.

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See my reply above, GP's are self employed, and under contract with the NHS, if this was any other commercial situation I would have gone to court (where I have been successful before!) because I did not receive the service I paid for! I paid into a (National) insurance scheme all my life, and was cheated. I should be able to claim.

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So go and sue dumpton. But it wont make you happy - or healthier. So what's the point?

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Have you thought of another approach to this.register your complaint with the surgery as is your right and then stay with your current Gp,agree a care plan that informs you of all diagnosis and test results and a review of how that plan is going set for a date in the future.you may find that although you are not his favourite patient you will probably receive the most exemplary of service given that in effect you are now managing your own health care and he will be aware of the consequences should he fail to follow through with an agreed care plan.

Good luck.

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Tried that, he didn't want to know! My Consultant and I are dealing with my COPD, directly at the moment.

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I agree with your friends above dumpton. Your GP has done something about the COPD as he has referred you to the nurse at the COPD clinic. You definitely shoud have been told about the pulmonary fibrosis diagnosis, but I agree with 02 it does sound like a cock up, not that that is an excuse.

Maybe you might want to think what solution and result you want and if you will get this from dealing with it in the way you are at present.

It is more likely your leaflet will upset other sick patients and I would imagine you will be removed by security and/or the Police.

I do hope you can see the Practice Manager and sort this out in an amicable way. Docs are only human and make mistakes (believe me I’ve experienced them too). That is not to excuse their omission, but best to try and work together to sort it out than being confrontational.

Wishing you well.

Cx

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My only comment is to wonder at the Consultants role in all this. Whenever my Consultant sends a letter to my GP a copy is automatically sent to me, at the same time, by the Hospital/Consultant. I think it is recognised that as a patient I am an adult and the GP does not have time to see each patient with information from Consultant's letters, so, to my mind your Consultant should have copied you in on the report to the GP.

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Agreed

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Every time I see a consultant he sends me a copy of his letter to my doctor

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Me too

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When I first went sick I had been swimming a mile every other day for over 20 years, but had become breathless when walking, five years ago when I was 71. I was diagnosed with swimming induced asthma, and stopped swimming, and limited my cycling! It wasn't until I started coughing incessantly that I was referred to a Consultant, who arranged CT scans etc, who then quite rightly wrote back with my Diagnosis to my GP. My GP then ignored this diagnosis, and passed me on to the COPD nurse for administrative medication, and withheld my Consultants diagnosis from me. I sneaked a look at the COPD nurses computer, and saw my Consultants diagnosis email addressed to my GP 6 weeks earlier! Both the COPD nurse and the GP are deliberately concealing Consultants diagnosis, because the Practice Manager, and the GP told me, they can't cope with the workload!

I am a retired professional and if I referred a client to a specialist, for an expert opinion, I would expect to receive a reply back, so I could then explain as best I could in lay mans terms, what the specialist had reported! This is normal professional procedure, so why are doctors allowed to conceal specialist information from their clients? After all I paid for it, all my life via my National Insurance.

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I don't know why you're convinced they were concealing the information. Sounds more like they assumed you already knew from your consultant so just put you on their COPD programme to look after you. One problem is that some NHS trusts have a policy of copying the patient in on letters and some don't, whereas in private practice you always get a copy. All I can say is that in my case, if I waited for my GP to advise me, I'd never get any information. I think they simply don't have time and there is no longer any continuity of care so rightly or wrongly, I regard it as my responsibility to obtain the information I need, i.e. if I don't hear from consultants, get test results etc. I make a GP appointment to find out.

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I asked about getting a copy of the correspondence between the consultant and my GP and was refused. They said I had to see the GP about any results.

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I find this extraodinary, it makes me wonder if the Hospital decided this, or if some GP surgeries ask for their patients not to receive letters. I had understood it was standard practice for patients to be copied in. Certainly GP's do not have the time to see patients after every hospital consultation, they would never do anything else!!! I wonder if there is any way to discover what the process is meant to be, or if there is no process and there is a patchy post code lottery, depending on hospital/consultant.

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I am not sure if it is the policy in this health board region because I have never had a copy of any results from hospital appointments no matter what the appointment was for.

I specifically asked this time because of information on this forum but the reply was as stated.

I find it so frustrating because these appointments which were ordered by the consultant have been strung out over several months and I do not as yet have a final appointment with the consultant.

I had an x-ray in August and when I called the hospital to enquire about the result, I was told that I would get that result once I had had my CT scan. It is scheduled for December 10th. so that is quite a long wait. I also had 12 blood tests at the same time and I am still waiting for those results.

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I can only wish you all the best with your results, when you get them, I would have thought that if there had been a problem with the blood results (or what the Consultant perceives to be a problem) you would have heard. If my GP blood tests (3 monthly) come up with an issue I get a telephone call very quickly, as it means I cannot have my next medication prescription, if certain probs show in them. I have been lucky, in that so far, the probs. have only related to the fact my condition has flared, so I have known the bloods will be up the spout before they take the bloods!

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Fabulous post ! I too am sick and tired of this ridiculous Umbrella term and the lame explanations by those professionals who defend it. It is nonsense. It relegates those with lung disease as an ambiguous affliction. God forbid a cancer patient was told that there cancer was cancer (not a specific type) and the treatments are all the same. I know many on this very forum have succumbed to the fact that it is an umbrella term. In my opinion many of the reasons lung disease research has been lagging is there are no definitive separations to zero in on. 16 diseases are hard to attack but one at a time would be advantageous. I'm sorry but Emphysema ,Bronchitis, Small Airways disease etc. etc. .all have different dynamics and its high time recognize that even though treatments or lack thereof are the same. That's just my two cents and personal thoughts and I'm sticking with it.

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There are not sixteen lung conditions which come under the umbrella of copd. There are only two. These are chronic bronchitis and emphysema. This is because the actual damage to the lungs and airways is virtually the same. This is a destruction which ‘pops’ the air sacs and destroys them. A closing down if you like. Chronic bronchitis has more of an element of inflammation which can cause more infections.

Other lung conditions have different lung damage and are not included under copd. Anyone who insists that they are is sadly ignorant of the facts.

I could go into a long description of the different types of lung damage but frankly I have done so many times and right now I want my tea and cereal before I nebulise my abs and set off to my volunteering ‘job’.

The problem above came about because the consultant’s secretary failed to send a follow up letter to the patient, explaining that along side a copd condition is another, very different one. This was a serious omission.

My relationship with bronchiectasis is with my consultant alone. I only use my GP as a conduit to obtain some of my drugs. Others are sent by my consultant from the hospital. GPs do not have the time and practices are often too badly organised to give patients the follow up required here.

There is no conspiracy to withold information.

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I have been diagnosed with Emphysema and Pulmonary Fibrosis so is the latter not a not COPD?

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No PF does not come under the copd umbrella. This is because it is a different lung disease with different causes and symptoms.

The COPD umbrella term is generally only used to cover emphysema and chronic bronchitis - 2 lung diseases. Some will say certain types of asthma might come under it too. Most people will have primarily one of these 2 diseases with some of the other. Some will have just one of them but the treatments are the same. x

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Totally agree. My husband was originally diagnosed with COPD until he was given a CT scan and it showed that it wasn't COPD but IPF, completely different lung disease and I being Idiopathic meaning they don't know what causes it, also is treated differently. Dr has removed COPD from his medical records.

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No, pulmonary fibrosis is not copd.

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Well said littlepom. x

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Thank you Redsox! There are some 200 cancers I believe, and if a GP refers a patient to a Consultant and after tests the Consultant sends a diagnosis back to the GP that gives detailed information about the cancer, and the GP says to the patient you have cancer, but I am not going to tell you what type of cancer, or where it is, does anyone think thats acceptable? Thats what GP's are doing up and down the country, they are just telling patients you have COPD, see the COPD nurse for treatment, next!

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Agreed

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The consultant should write to the patient, whether we are talking respiratory conditions or cancer. When my daughter was diagnosed with breast cancer the consultant wrote directly to her. If he had not done she would have been on his case.

Your gripe is with the consultant who failed to ensure that you received the letter or to explain to you properly about your conditions. Over 40 years my consultants’ various secretaries have failed to send on the letter. I phone the secretary and make absolutely sure that it is put in the post to me that night. Quite frankly, the GP is not the person to explain Pulmonary fibrosis to you because their training is not sufficient.

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How did you ‘find out by chance’?

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I had been referred to the COPD nurse, by a stereotype letter with 7 or 8 tick boxes, about treatment, mine was ticked "your consultant has suggested a change of inhaler, contact me for an appointment". I did so, and met the COPD nurse who explained the new inhaler to me, and when she went off to get one, I sneaked a look at her computer screen. Lo and behold there was an email from my Consultant addressed to my GP 6 weeks earlier, and 3 days after I had seen her. When the COPD nurse returned I asked her if I could have a copy of the email, and she asked me what I wanted it for, Duuurh! I said I think I am entitled to know what my Consultants diagnosis is, and she reluctantly printed off a copy! Otherwise I would have been kept ignorant of my diagnosis at least for 9 months, or year which was going to be the next appointment with my Consultant.

I do NOT accept my Consultant should have copied me in on the email to my GP, who wants to receive a copy of an email saying the patient has two life threatening, and incurable lung disease, followed by a lot of medical jargon, in the post? No, the correct, proper, and professional procedure was for my GP to call me in, and then explain the Consultants diagnosis to me, and the prognosis, but he didn't, he just lazily shunted me off to the COPD nurse without explanation!

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Presume you have not been declined any treatments from your GP practice . I am happy that I get a copy of the GP letter from the consultant I've recently visited.

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Did the consultant not discuss his findings with you at your appointment ?This is most unusual.

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Please see my reply to Redsox.

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It wasn't my GP who gave me the diagnosis,it was my Consultant. I also got a letter ,a copy of the one sent to my GP explaining everything. Unless I knew all the circumstances re this omission I would be very cautious. GPs have mountains of paperwork these days and as said before are only human. Upsetting the entire practice will get you nowhere,you need them on your side. I have pulmonary fibrosis myself. Keep us posted!

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See above. My GP wants to retire, he told me, but no one is interested in buying out his share of the practice, as he is a senior partner, probably because he is asking too much. I am a grown man, and expect to be treated with respect, and as an adult able to give "informed consent" to my treatment! I can refuse treatment on the grounds that if someone deceives me once, I don't trust them a second time. I gave everyone concerned three chances to explain themselves, but they just wanted to continue deceiving patients!

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I agree with the majority and think this is a clerical cock up rather than your GP. I can understand your frustration but your uncompromising attitude will help neither yourself or other sick patients in the practice. Please use your energy in a little conciliation and understanding that we are all only human and even with the best of intentions mistakes can be made. Give yourself and them another chance, they don't have time for conspiracies. Stay well.

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See above. This is not a clerical cock up, it is a deliberate policy, and I know of several other people who use my GP practice, and met many others who believe they have COPD, but haven't had their Consultants diagnosis explained to them! Judging from some of the comments on this Forum there are many others in the same boat, there are frequent references to people saying they have COPD. Incidentally, I am a Christian Quaker, and have great patience and tolerance with people who may be mistaken, or in error, my GP was given every opportunity to explain himself, but failed! There comes a point when it is time to be intolerant of intolerance!

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Not sure what Quakerism has to do with anything! I think you need to deal with your anger issues first.

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COPD nurses are highly trained - they are specialists. There is nothing wrong with being referred to one of them. Yours is likely to know at least as much as your GP about copd. She wont necessarily know much about pulmonary fibrosis though, as this is in a different category to copd, being a restrictive lung condition whereas copd is an obstructive one. I would have expected your consultant should have explained it all to you although maybe you werent the easiest person to communicate with? (Judging from your interaction here on this post.)

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I've read this post along with your original one and you come across to me as being a right royal pain in the rear. You've made some pretty serious allegations against your GP and respiratory nurse accusing them of deliberately with holding information when it seems there was nothing more than a simple breakdown of communication. In my opinion your negative reaction and trouble making attitude leaves me sympathizing with the people in the NHS that have treated you. It makes no difference what your diagnosis is the out come for you remains the same and the treatment you've been receiving is probably correct for your conditions.

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You are wrong, see above replies.

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No I'm not wrong, thus far we only have your side of the story and you seem to be here angling for sympathy and support. You won't get any sympathy from me. You allowed a simple issue to escalate into something quite nasty, instigated by none other than you. Are we to assume that throughout the duration of your life you've never slipped up or made a mistake before ? I repeat what I previously said you come across as a trouble maker who is bitter, vindictive and seeking revenge against the very people that have had your best interests at heart. I sincerely hope you stop your child like behavior towards your GP and respiratory nurse, put it down to experience, put it behind you and get on with your life as most civilized people would do.

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You can request a copy of your medical record from the practice- costs about £10. Then u have all your information. Either find another GP practice, meet with the current GP practice manager, or research a no -practice based option. But do something so that u feel informed and in control. Lung diseases are a Cinderella group of illnesses so getting tailored treatment can be a challenge. On the up side- u do have a Consultant referral. Best wishes with this.

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See my previous replies above.

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I'm sorry I do not mean to offend but I was to believe that although copd is a broad term for different lung diseases the treatment will be the same??? Also and I'm not sticking up for your g.p or anyone but when you was diagnosed did you not ask questions about what exactly you have. Just that I'm a pain and ask loads of questions each time I go just to make sure both me and my copd nurse are on the same page and I have a thorough understanding of what I have and how I deal with it. If you was told all the minute details would it have made any difference to your treatment or therefore lack of?

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See my previous replies

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Speak to your local health watch they should be able to help you with your Doctors problems

Ref the diagnosis the COPD covers all three health problems under one umbrella so to speak

We have a new Doctor at our surgery and it was him that told me that COPD covers all three illnesses

I hope this helps

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Your doctor is wrong which doesn’t surprise me. Emphysema and chronic bronchitis are classed as copd ( a political decision going back to Tony Blair’s government) some asthma consultants try to get an obstructive form of asthma included under this banner because copd was given a budget not given to the rest of us. IPF and bronchiectasis are not classed as copd.

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If I said it was 16 diseases I was in error and I do apologize. I was piggy backing on Dumptons comment . My point was whatever it is 1 or 2 they are different I don’t care who’s decision it was ( in this case a politician) my point is Emphysema and Bronchitis are different no matter what the subtle similarities are. I am not here to argue semantics. I just want to voice an opinion that E and B are different diseases with different dynamics and it doesn’t matter to me who labeled them under an umbrella or not . Medicine should be more sensitive to each one as a separate entity as it isn’t fair to dogpile a disease and sweep it up as one. There actually are some if very little reversible elements to Bronchitis as there are none in Emphysema which right there is a difference. Also other elements that separate them as such . My argument is stop umbrellaing ( no such word lol) them if they were the same they wouldn’t have different names. Jack and Jill are both children but they are different too like it or not

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I absolutely agree with you on the differences. Unfortunately in the UK the lumping of these conditions together was done to put together the two conditions which had the most sufferers ( and therefore most potential voters). Vastly more than any other lung conditions. A programme and funding was then instigated for this group which was not available to other conditions. Over the intervening years this original plan has deteriorated to being mostly GP based and the funding has faded away. They used the term COPD because it was coined at a conference in the US in the early 1960s to cover these two conditions.

Today it is nothing more thana lazy way of naming these two conditions.

However, if you think that you are angry about the description of these two conditions I can assure you that you are not half as angry as I am in the blatant funding discrimination between the funding of cf and non cf bronchiectasis and ipf and any other conditon.

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@liitlepom I’m not angry and if I said I was angry I was mis quoted but I do wholeheartedly agree with your assessment on discrimination of funding of the other lung diseases. It is shameful but thank goodness we have forums like this that initiate discussion on these matters. The quest needs to start somewhere and this forum is as good as any. Confucius said “the longest of journeys begins with a single step. Keep the faith and good luck

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You could always start an international campaign to get rid of the ridiculous copd term which causes a lot of confusion. I will sign!

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I find your explanation of the history of the copd term fascinating LP. Thank you.

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Many GP's are concealing Consultants diagnosis from patients by just telling them they have COPD, see my replies above/

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Complete and utter rubbish and where can you point us towards such statistics. From my diagnosis not just of emphysema but also a multitude of other illnesses and disabilities I suffer from my experience with the NHS has been second to none. There again that probably has a lot to do with my behaviour towards those persons I both rely on and have relied upon to care for me. Yes I've experienced issues myself but I don't become monumentally angry and make myself a thorn in peoples sides as you have done because I'm far more polite and civilized and don't expect perfection from every body.

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"Many GPs" ? Have you evidence of this Dumpton? For the life of me I can't see why any GP would do this particularly as you can ask for copies of all letters? I went to my GP,like you,with a persistent cough. After x rays and scans IPF was diagnosed.It was the Consultant who then did any referrals. I don't take any medication so don't often see my G P regarding my problem.I do make lists of questions however,both when I see my consultant or GP.

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Im lucky my gp, practice resp nurse and consultant keep me well informed. I asked to have all correspondence copied to me witch the hospital are happy to do. This gives me all test results ect so i can know what questions to ask befor i go to my gp. Good luck with sorting out a gp. I do think as your conditions are serious and life limiting you should of been informed as to thear true nature as you say copd is not in its self a illness just a umbrella term

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Hi,

I wish you well with working out this problem. I live in Australia but I would expect my consultant/specialist to discuss my health and tell me the diagnosis - not my GP. That way I can discuss any concerns or questions with the consultant who would have greater knowledge and experience of the disease. The GP may help to monitor the disease but the consultant would be the one I go to for answers. Good Luck.

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With the greatest respect, this forum is a place I come to for friendly help and advice from other sufferers. I’m not really sure that a thread like this has any place here. It’s a one sided story, full of assumptions, inaccuracies, and unproven accusations. Personally, I don’t find threads like this helpful in any way. I have just spent a week in hospital being treated by the NHS for a suspected mini stroke and I have nothing but praise for the staff. They were professional kind and caring at all times. If I worked for the nhs and read the anger and hate being aimed at them in this post I would be distraught. As I said, in my view this thread has no place in this forum. Sorry if my view upsets anyone, just saying how I feel.

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Are you back home now?

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I was wondering the same thing. xx

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Hi Cas. Just came home last night. They don’t know what happened to me yet so I need more tests through my doctor x

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I'm glad they are investigating further Brian. Having long term lung issues can definitely cause other problems. Just take it easy. xx 🌿

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Hi HH, they let me come home last night. Need more tests to find out what happened to me x

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It’s good news you’re home. But I really hope they find out soon what happened. I’m guessing they looked at your heart? My dad had an event, everything pointed to it having been a stroke, but it turned out to be his heart. Sorry that was meant to be helpful but I don’t know if it is 😕

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That’s really helpful thank you. I have a suspicion it’s either my heart, or my oxygen level. My BP was still 183/117 when the ambulance arrived - an hour after I’d collapsed, and my oxygen was low. For some reason my BP spiked or my oxygen fell, but as of yet we don’t know why x

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Best wishes for the rest of your tests. I really hope they find out soon what’s happened. Not knowing is really hard. Take care of yourself.

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Brian, you're far more eloquent than me. I was irked by reading this post and a previous post from the original poster in which his intention seems to be to discredit those very people that have been treating him. I agree with you this isn't really the place to air such grievances in the manner that has been displayed.

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I dunno about that Nick. I’m just better with words than you 🤣🤣 Seriously though, I just don’t get it. Why bite the hand that feeds you? These people work tirelessly to look after us, for very little pay and very long hours! Yes they sometimes make mistakes, we all do! Take care 😊

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Just joking btw 😉

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You are right this thread is really a waste of space as he is only stirring up opinions and is so antagonistic as to be unreasonable. We all have health problems on here, yet the majority usually have nothing but praise for the NHS and those who work in it under excessive presssure all the time. Who needs it?

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I have acres of correspondence with the East Kent Clinical Commissioning Group, the Care Quality Commission, the NHS England, General Medical Council, and others, and none of them can stop a GP concealing a Consultants diagnosis from a patient. I have attempted to try and get my GP and Practice Manager to discuss this issue, which they acknowledge is occurring, in writing but say with 10,000 patients its too difficult to copy in patients with their Consultants diagnosis. The Practice Manager blocked me raising the problem at the Patients Participation Group, and as this policy remains I only wanted to refuse further treatment from my GP, because I don't trust him! It used to be called professional integrity, but they no longer understand the concept! I am an adult, and I have a right to be able to make informed consent regarding my treatment, but how can I do that if my GP has a policy of withholding my Consultants diagnosis from me? Yes, I have lots of evidence locally, and from these posts, that people are not being informed of their consultants diagnosis, which is unacceptable, high handed, unprofessional, and in this day and age unforgivable!

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I really can’t see why this thread doesn’t have a place here. Whilst I feel (as you can see from my reply above) that the situation could have been dealt with in a much more consiliatary manner, I defend the right of dumpton to write this thread. He has not been abusive to any member and has replied to critisism in a very polite manner.

As an aside to this thread Brian, I am sorry you have been unwell and hope you feel much better very soon.

Cx

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Thanks Cofdrop 😊 The world would be a very boring place if we all agreed. I genuinely hope Dumpton gets the help they need as it’s obviously made them very angry, which is not a healthy place to be when you have lung disease. Take care 😊

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🙂 You’re right it isn’t a good place to be.

Cx

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Im always copied into consultant letters too.

I can understand your angry feelings but it wont change the diagnosis?

Some surgeries/GPs practice ‘patient led’ approach so if you never actually ask about your diagnosis then they dont tell you everything as they dont want to remove hope.

COPD is an umbrella term for other lung conditions but Emphysema is much the same symptoms anyway? In the old days it was called Emphysema not COPD-personally i think its a dumbing down of the severity of the condition so people dont get scared. Many thousands will develop it every year as they age and mostly related to past smoking habits-the only conspiracy if there is one is

That smoking kills and the tobacco industry and government are protected from litigation whilst thousands will die from their their tax greed!

Its an addiction and we say but they say we had free will and chose to smoke!

All we can do is warn others not to smoke, look after ourselves, wait for someone rich enough to sue for damages and accept our lot!

All complaints should go to Practice manager that way it doesn’t get too personal.

Hope you get something sorted soon but upsetting others in the surgery wont help your case or want them to keep you on their books!

When you feel less angry-try again to speak to manager?

Good luck

Janzo

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I still don't see why you should be complaining to the extent that you are, yes you have a grievance that they didn't tell you the exact words of your lung diseases but was given the umbrella term instead, fair enough, but on the same hand did you question and enquire about your exact diagnoses to know the full terms prognosis treatment etc, seems swings and roundabouts to me. You are being treated for your lung disease and no where can I see on your posts that the wrong treatment or lack of has had an adverse affect on your health. I have nothing but praise for the hard working nhs that saved my life when I was unresponsive and for all the work they continue to do each and every day with little pay long hours and hardly any recognition for what they have done.

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Well said 👍

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why thank you kind sir 😂 xx

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No problem m’lady 😛 x

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"parker" as you will now be known by xx😂😂

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🤣🤣 x

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That’s just awful ..Keep us informed ..

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I routinely have to inquire of the GP for test results and reports from consultants. I thought it was the norm - they don’t follow up with me, I must follow up with them. Maybe every practice is different. I wouldn’t assume ill will on their part. When you look for trouble,you are sure to find it as my Da used to say :).

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Same. I always have to ring up for results, ask the right questions and don’t always get the answers that I think I should get. But, I don’t think getting as angry as the OP seems to be helps anyone, least of all them 😊

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Hi dumpton you deserve to be treated much better than this just get away from that practice and get all the help you need from another practice It’s exhausting and depressing dealing with some people.There isa gp at my practice who makes me feel very 2nd class I tell the receptionist don’t put me down for him can’t understand a word he says Take care xxx

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I can understand your frustration, I might be totally wrong on my thoughts and will probably be ribbed for it but do we not have to take responsibility and make a GP appointment following any Specialist Consultation or tests to discuss All results and any Specialist Findings.

I have a tendency of making notes of tests I have had and Specialist's I have seen then gI've the list to my GP and ask for all results wether good or bad.

Ronnie

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Hia I am back living working Africa trained USA always had private med or exchange . I am psychologist. Some thing interesting here . Because I sort part of the professional treated differently. I have out lived 4 years the so called copd my first nice consultant . I as trained USA allopathic & complementary med run together . Am on own Uk yes was born here . People here not prepared. To take their own health into their hands . People pay car insurance.house insurance. Cat ect . Why not little here . Med I have always had letters from consultants . Some good sense humour .

But they know I understand medical language. Byway if you gotton loot are not too old don't have heart probs nice new pair lung South Africa 60000 dollers . Wish u. Well getting cross does not help . I don't know your story but good bit acupuncture & fab herb lungwort .

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